'busted out the new cane today

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'busted out the new cane today

Postby Loobie » Tue Aug 05, 2008 2:51 pm

Well I finally did it. I've had a cane for about a year now. I wanted to get it before I needed it to try and learn the most effective way to use it and practice and yada, yada. Anyway, I had customers in all damn day today and had to spend mucho time in the shop. The last time I did that, I had to have someone take over for me after lunch. Well I'm still ambulatory without aid, but after about 1/2 hour standing on the concrete, my legs will simply not carry me very well - at all. I mean they just stop wanting to work. Anyway, I broke the cane out and did the whole day. It wasn't easy, but I did manage to finish the day with them. I actually think where it helped me the most was not when walking, but when standing in one spot on the hard ass concrete. I leaned on that dude until I thought it was going to snap.

At any rate it was a lot easier emotionally than I thought it would be. To be truthful, it was a bit liberating in a way. People were more concerned than anything, but I know there are some people who look at me funny when I park in one of the handicapped spots and barely have a noticeable twitch in my gait until I get fatigued. People just don't understand MS. I mean they think it's either on or off like an injury. I mean if I spend most of my day designing something on CAD, I get around pretty damn good. But then when I have to walk alot it all goes south as you all know. I just wish I could give the douchebags that don't think I really have anything going on a day in my skin when I have to exert myself. They just don't understand, or maybe even buy, when I leave one day really struggling and come back the next morning and appear normal. I guess they really don't have to understand, unless they're my boss! But anyway it was a huge day for me because that's the first day I've used anything, besides medication, to help me during the day. Also the first time I gave into using an aid. Hopefully it saves me energy and I can use it for a while before I have to sit permanent. I know that's in the cards for a lot of us, but man I don't think that one will be as easy as getting out the cane was.
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Postby Terry » Tue Aug 05, 2008 4:49 pm

Lew,
Mine is retired (temporarily?) to the closet. It is not needed now. Here's hoping yours will be retired soon. All my best.
Terry
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Postby MrsGeorge » Wed Aug 06, 2008 12:50 am

Not an easy thing to do so well done for doing it and taking care of yourself! - I really struggled when I had to start using a cane at work.

Mine is now in semi-retirement (it lives in my car or bag and I use it if I have to but i tend to bounce off file cabinets at work instead)
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Postby TwistedHelix » Wed Aug 06, 2008 5:11 am

Lew,
When it comes to using equipment, I think most people struggle on without it for as long as they can: putting off the fateful day until they feel they just can't manage any more. In a strange way that's a good thing because that final moment of giving in comes as such a huge relief that any qualms you may have had are completely forgotten. We all fret about things that we fear may happen, but nine times out of ten the reality isn't so bad.
Sometimes it can even feel like a bonus when at last our symptoms become visible to others: no more accusatory stares for using the disabled parking bays!
I tried several different styles, including collapsible ones, but they can be a real pain when you try and lean them against something – they ALWAYS fall over! – I think you can get a little clip on gizmo to help prop them up on tables, shop counters etc.
Dom
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Postby Loobie » Thu Aug 07, 2008 2:28 am

Thank you guys. Using it at home was harder, but I managed that as well. It's a good thing I only have ceramic and hardwood on the main floor, so it's not an adjustment. I guess I'm assuming it will be difficult, I don't think I've ever tried it on carpet!

Dom you are so right. It was more difficult my second day since I had to sit through a major long meeting in one of our plants where the bathroom is like 50 yards away. Really bad design. At any rate it is liberating, but I just hope I don't scare the hell out of my boss. Those are the same guys I worked with 10 years ago that were used to me taking every Friday off to play in racquetball tournaments. The thing that is really hard right now is that I used to have a bit of gas in the tank. I could hang for a good little bit, but now I show up to work out of energy and worn down. It's not good, but I must admit the cane helps. I got a new full contact orthotic also and that kind of hurts, so I need to adjust to that as well.

I did struggle on as long as I could and for that I am proud of myself. I just couldn't do it anymore when walking through the factory. I'm glad we have a very clean shop because an oily floor, which is usually the case in industries like mine, would be like a mine field. I guess I have no choice but to take this stuff as it comes and stay in the game until I can't do it anymore. Thank you all for your support. It helps me alot. I just wish I recovered from downward progression like some do, but I just don't seem to. Maybe that's why all the meds don't seem to work. My Dr. wants me to try Tysabri if I keep getting worse on Tovaxin. I think I'm going to but the recent press does concern me to a point. Man am I rambling! Well I'd better sign off and get to bed.

Lew
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Postby robbie » Thu Aug 07, 2008 5:12 am

It's a good thing I only have ceramic and hardwood on the main floor,

this will be really good too if at some time you have to slide your feet rather than lift them.
Had ms for over 19 years now.
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Postby gwa » Thu Aug 07, 2008 8:07 am

Loobie wrote:
My Dr. wants me to try Tysabri if I keep getting worse on Tovaxin. I think I'm going to but the recent press does concern me to a point.

Lew


Have you thought about Campath or Revimmune? The people on those two drugs seem to be getting better.

gwa
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Postby Loobie » Thu Aug 07, 2008 8:30 am

GWA,

I'm actually getting things together to check out Revimmune. I need a more recent MRI, but I was going to collect all my necessary goodies until I get my next Tovaxin shot. There's no need to drop out of that trial since I know I'm getting actual Tovaxin until I find out what Johns Hopkins says. My site is also holding a Campath trial, but there is a chance I'll be on the placebo arm and I don't want to do another blinded trial right now; I'm just dropping too fast to risk another year. There could quite possibly be nothing that my MS is going to respond to, but I agree in checking into the things that seem to be working like those two. When I said "I think I'm going to" about Tysabri, it was more me thinking out loud beause my Dr. suggested it as an alternative, but I think you have be off of that for quite a while (like 6 months or something along those lines) if you are to be eligible for Revimmune, so after I look at my MRI to see if I qualify at Johns Hopkins, my next step is to check into getting enrolled at JH. However, if I don't qualify and Tovaxin is still not working, I will probably try Tysabri. My hope is not all lost on Tovaxin yet, but I am at the very least gathering what I need if I qualify for Revimmune.
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Postby gwa » Thu Aug 07, 2008 10:12 am

Loobie wrote:GWA,

I'm actually getting things together to check out Revimmune. I need a more recent MRI, but I was going to collect all my necessary goodies until I get my next Tovaxin shot. There's no need to drop out of that trial since I know I'm getting actual Tovaxin until I find out what Johns Hopkins says. My site is also holding a Campath trial, but there is a chance I'll be on the placebo arm and I don't want to do another blinded trial right now; I'm just dropping too fast to risk another year. There could quite possibly be nothing that my MS is going to respond to, but I agree in checking into the things that seem to be working like those two. When I said "I think I'm going to" about Tysabri, it was more me thinking out loud beause my Dr. suggested it as an alternative, but I think you have be off of that for quite a while (like 6 months or something along those lines) if you are to be eligible for Revimmune, so after I look at my MRI to see if I qualify at Johns Hopkins, my next step is to check into getting enrolled at JH. However, if I don't qualify and Tovaxin is still not working, I will probably try Tysabri. My hope is not all lost on Tovaxin yet, but I am at the very least gathering what I need if I qualify for Revimmune.


I think you are right to check out all avenues. I wouldn't be as interested in Revimmune if JH was not connected with it. This hospital is among the best in the nation, if not the world.

Several people that post here have had Campath and seem to be almost normal again, so it is also another to check out. I read recently that Campath is available in the states and I was not aware of that.

I know if I were in the group that could be helped with one of these meds I would be checking them out with my bags packed.

I hope that something works for you.

gwa
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Postby Loobie » Fri Aug 08, 2008 4:12 am

My site is doing so many MS trials right now I can't keep them straight. They are doing the BioMS MBP stuff, Campath, Tovaxin, Rituxan and were talking to a pharma. the last time I was in there about one of the oral meds. The campath is one that I am really interested in and will get more info. on 9/9 when I get my next dose. They are having one trial where everyone gets a med. that involves either Rituxan or Campath. I can't remember which. It is an 80/20 split and the 80% will be getting the rituxan or campath (I just can't remember which), and the remaining 20% will be getting Rebif. That way everyone gets side fx, and no one is left 'flying naked'.

I fully agree with the JH stuff. That would almost be like the Cleveland or Mayo clinic doing it. Not too many doubters when they endorse something. Anyway, as you probably well know, when you are at that point where you are going from "I can pretty much function with challenges" to "I am losing a lot of ability that keeps me from doing lots of every day type stuff" it's so very scary. We are trying camping again this weekend and I had a good cry with my wife on the couch because really the only thing I can do is pack my bag and drive the vehicle. Other than that she has to do 100% of the lifting and going up and down the stairs to get everything packed up. It just wipes me out for the rest of the day now if I do stuff like that. Last season I could help. It would totally wipe me out, but the ride to the campsite was enough recovery time. Then I would help set up the camper. Be wiped out again, but could sit down with a cold one and get back to just walking slow. Now it trashes me for the day and I'm basically starting out the day fatigued. That's just a really tough spot when you are flipping from fully functional but challenged to not fully functional. I am really going to have to start drastically limiting my activity/contribution simply out of neccesity. It's very sobering and I find no positive thoughts coming my way as I go through it. I have to find a way to keep my chin up, but it's foreign ground. I'll give it hell, but this is no fun as you well know.
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